I was diagnosed with Paget's disease of the nipple eight months after diagnosing myself through the internet. Misdiagnosed first time round. I had surgery followed by 7 weeks of radiotherapy. I was diagnosed in April 2009 and had radiotherapy from early August to early October 2009. The reason for my blog is to make it easier for anyone that is looking for someone to talk to about Paget's disease as I realised it is not that easy to find my page. Paget's disease is a rare form of cancer therefore there is not much support available for women newly diagnosed with it. Love Liz xx

Great work Liz!! I have just directed Sue F to your blog too, It is so important to feel supported especially when a minority like Pagets. Wishing you a happy and healthy 2012 Too. xx Tanya

hi there, thanks for joining us here on the site, We welcome everyone here, it is so good especially to be able to get and give support, we have all had bc, we know the feelings and fears of the journey. and although we cant give medical advice, we can offer support, and hints and tips which have made the journey more bearable, so once again like we say on here, by helping ourselves we can also help others. Regards Moira

Hi Tanya, Thank you. I wish you the same. I just thought I should put something in a blog for Paget's disease as it is so rare. I am going to have my aerolea tattooed in the next few months. Cheers, Liz xx

I have an extremely itchy, red, flaky and tender left nipple. I have spoken to my GP and she did a swab and gave me a script for batroban ointment. This has not helped and it is still red, sore, itchy and swollen. When I mentioned possible pagets she dismissed it immediately. I'm feeling concerned as it has been like this for over 2 months (sometimes varies from worse to a bit better but is never completely normal) and it is very uncomfortable to live with. Any advice you can offer on what to do next would be most helpful...

Hi Sue, My GP also had never seen a case of Paget's disease of the nipple. I had no underlying cancer in my breast either. I had a lot of cysts that they burst under ultrasound. I had my third year check in April and they found two suspicious masses that turned out to be the cartilage that they took from behind my ear to make a nipple. Cheers, Liz

Paget's disease | Online Network

Tanya
Member
14 years ago
Great work Liz!!

I have just directed Sue F to your blog too, It is so important to feel supported especially when a minority like Pagets.

Wishing you a happy and healthy 2012 Too. xx

Tanya
moira1
Member
14 years ago
hi there, thanks for joining us here on the site, We welcome everyone here, it is so good especially to be able to get and give support, we have all had bc, we know the feelings and fears of the journey. and although we cant give medical advice, we can offer support, and hints and tips which have made the journey more bearable, so once again like we say on here, by helping ourselves we can also help others. Regards Moira
ymewhynotme
Member
14 years ago
Hi Tanya,

Thank you. I wish you the same.

I just thought I should put something in a blog for Paget's disease as it is so rare.

I am going to have my aerolea tattooed in the next few months.

Cheers,

Liz xx
xoxo
Member
13 years ago
I have an extremely itchy, red, flaky and tender left nipple. I have spoken to my GP and she did a swab and gave me a script for batroban ointment. This has not helped and it is still red, sore, itchy and swollen. When I mentioned possible pagets she dismissed it immediately. I'm feeling concerned as it has been like this for over 2 months (sometimes varies from worse to a bit better but is never completely normal) and it is very uncomfortable to live with. Any advice you can offer on what to do next would be most helpful...
ymewhynotme
Member
13 years ago
Hi Sue,

My GP also had never seen a case of Paget's disease of the nipple.

I had no underlying cancer in my breast either. I had a lot of cysts that they burst under ultrasound.

I had my third year check in April and they found two suspicious masses that turned out to be

the cartilage that they took from behind my ear to make a nipple.

Cheers, Liz
Sue_F
Member
13 years ago
Hi Liz. Good to hear you are going well and the masses were ok. As well as my G.P. my breast surgeon also had to admit that I was the only patient he had seen without an underlying cancer . Pagets is quite a rare form eh ! I am going well and have decided against reconstruction, at this stage anyway. I just can't face more surgery. I agree with you if I was xoxo I would ask to see another Dr .....also agree the local anesthetic for a biopsy is not nice. Take care. Sue
ymewhynotme
Member
12 years ago
My advice is to go back to your GP and demand a referral to a breast surgeon. Make sure the breast surgeon doesn't dismiss your concerns. You may

Request a biopsy of your nipple. The local anaesthetic will hurt like hell but it is worth it for your own peace of mind.

Kind Regards,

Liz
Liz4
Member
12 years ago
Hi, I have been to a GP who thought I had Paget's of the nipple. Both nipples have a yellow crust and are sore and inflamed, one is sometimes inverted. He sent me for mammogram and ultrasound which were all clear but he wants me to see a breast surgeon. I cant get in to see her for four months so returned to my GP who said I dont need a surgeon and is sending me to a Dermatologist. I had extensive tests in 1997 at a breast clinic where they decided not to biopsy. My problem is I suffer from a rare auto-immune disease involving skin and muscles , it also comes with a high cancer rate. Its called Dermatomyositis. I have been turned inside out looking for the tumour in the early stages of diagnosis. Have had this debilitating illness for 26 years. Reading the info on here I am looking for help. Should I see my disease specialist and ask him to send me to surgeon a bit quicker or go down the skin specialist road ? I have done all this before with a rare disease and I cant face being wrongly diagnosed or misdiagnosed again. I dont have the energy to see lots of docs and get nowhere. There is something wrong with my nipples , I know it but it was shrugged off as probably being connected with my disease. I did ask an auto-immune expert in the US and he said Pagets has nothing to do with my disease. Can anyone offer any advice on what I should do ? I am used to being my own advocate medically.
Jk48au
Member
12 years ago
Hi Liz4 Just read what you have been through, my advice is go back to your GP and ask him to get you into a surgeon as quickly as possible. It maybe serious or it may not be, but it needs investigating NOW. My nipple had been tipping under and was sore and crusty, my doctor sent me for a mammo and referred me to my surgeon straight away. Nothing was picked up in the mammo nor ultrasound but my surgeon saw a distinct change between it and the last one. Next was biopsy then mastectomy. Mine apparently was hidden under the nipple and had become invasive with the potential to be aggressive. I hope it all proves to be nothing for you but you need to push for an early appointment. Good luck let us know how things go Regards Jill
Jk48au
Member
12 years ago
Hi Liz4 Just read what you have been through, my advice is go back to your GP and ask him to get you into a surgeon as quickly as possible. It maybe serious or it may not be, but it needs investigating NOW. My nipple had been tipping under and was sore and crusty, my doctor sent me for a mammo and referred me to my surgeon straight away. Nothing was picked up in the mammo nor ultrasound but my surgeon saw a distinct change between it and the last one. Next was biopsy then mastectomy. Mine apparently was hidden under the nipple and had become invasive with the potential to be aggressive. I hope it all proves to be nothing for you but you need to push for an early appointment. Good luck let us know how things go Regards Jill